The Centers for Disease Control and Prevention made headlines recently when it removed critical public health data from its website to comply with President Trump's executive orders to scrub any mention of race, gender, sexual orientation, disabilities and other terms from U.S. health agency websites.
Last week, the Urban Indian Health Institute called on the government agency to restore the data, citing treaty and trust violations. UIHI Director Abigail Echo-Hawk (Pawnee) spoke with Native News Online about why restoring the data is critical to public health in Indian Country, how numbers tell a story, and the meaning of data sovereignty.
This interview has been edited for brevity and clarity.
We know that Indian Country has long suffered from lack of sufficient data and restricted access to data. What is behind this? What are the public health implications?
Data in the United States has been gathered in a way that ultimately either harms Native communities by only talking about us in a negative way, or it's used to eliminate us. Our treaties are tied to having tribal members. When data isn't gathered on us, it directly impacts whether or not Indian Country is allocated the resources that we deserve and have a right to. We saw examples of this in COVID-19, where bad data was used to distribute COVID-19 money at the very beginning of the pandemic, which directly impacted whether or not tribal nations could care for their tribal members.
I call it a data genocide because this is the modern way that our people are being killed — because we don't get the allocation of the appropriate resources that are mandated by our treaty and trust responsibility. It directly results in not having the resources to take care of our relatives who are suffering, and it can result in their deaths.
Why is there so little data that includes Native people, and what can be done at the tribal level to change that?
There are a couple of different reasons. Our people are hesitant to participate in data-gathering efforts because data has been used in a bad way for so long.
Many tribal nations have begun to regulate the way data is gathered on their lands and from their tribal members. It's an incredible opportunity to exercise tribal sovereignty to ensure that whatever information is gathered for your people is done by your people and in partnership with those who want to benefit your people. That is Indigenous data sovereignty — the sovereignty over information that is gathered about our people and how that data is used.
You mentioned bad data — what is that?
Data that does not have representation of American Indian or Alaska Native people in it will often have a little asterisk that says not statistically significant, and it just means that they did not put in the appropriate efforts to ensure that they gathered data for American Indians and Alaska Natives. The opioid crisis is a perfect place to look at that. When we think about death certificates, there's a common saying for those of us who do data work in Indian Country, which is we're born native, and we die white; funeral homes, coroners, and medical examiners will mark a Native person as white-based just on visual representation.
That resulting bad data affects our understanding of things like the opioid crisis. When people have died by overdose, it's very important for us to understand the story of that individual's life: where could we have assisted, and where could there have been an opportunity for change?
When we're racially misclassified, they're taking away that ancestor's opportunity to contribute to the story of their experiences and how we can improve the lives of other people in Indian Country.
The other thing about bad data is data that only talks about Native people as a problem to solve. We are not a problem to solve. We are every single one of the answers. Deficit-based data that only wants to talk about us as a problem is also bad data in that it upholds stereotypes, justifies institutional and structural racism and harms native people.
You talk about decolonizing data in your work. Tell us more about what that means.
Our data is our stories. It's our grandparents, our sisters, our aunties, our children. When we talk about vital statistics, those are our ancestors who have passed on. Decolonizing data is taking back the Indigenous value system of protecting and utilizing our stories because we love our people and we want to ensure their life and well-being.
Let's talk about what's happening at the CDC right now. A lot of the public-facing data on the CDC website has been removed or changed since late January. Tell us what you think is behind this and what this means for Indian Country.
The CDC removing these essential data sets is devastating to Indian Country. The information held within that data does not belong to the CDC. Any information related to American Indians and Alaska Natives belongs to those tribes and belongs to Indian Country.
It's an assault on tribal sovereignty and Tribal Public Health Authority, which was established under the 2010 Affordable Health Care Act.
During COVID-19, we were unable to get the data that we needed to understand how COVID-19 was decimating our communities. I was on the frontlines fighting for that information. When we finally got it, they barely had any information at all, but we needed that information to understand where we could intervene, where we needed to put protections in place, and we needed to understand how this was going to impact our community — not only during COVID but in the 5 or 10 years following COVID. The result of that was a report by the U.S. Government Accountability Office that detailed how HHS was failing to fulfill trust responsibility by getting information to Tribes and Tribal Epidemiology centers.
Out of that, tribal consultations were conducted, and HHS implemented significant changes to ensure access to data sets. The actions of the CDC are completely the opposite of that.
The removal of this data does not allow us to see the experiences of our relatives. The relatives who are the most harmed, such as our LGBTQ+2S community, their data has been removed. When we think about the crises that affect them, for example, they are more likely to experience sexual assault and rape.
Removal of data regarding their gender identities takes away our ability to assist them with their mental health, serve them after a sexual assault, and make sure that they get the resources that they need so they don't become a victim of human trafficking and then end up murdered.
When that information is gone, so is our ability to serve our relatives.
This data doesn't belong to the federal government; it belongs to the tribal communities. That is upheld in federal statute. Significant efforts and tribal consultations have been made to reaffirm that a process was put in place, and now the data is gone.
What can people do right now to push for the restoration of that data?
Call your member of congress and advocate for the data to be restored. All data that has disappeared needs to be immediately restored. We have to not only be advocating and pressuring the incoming administration to uphold the treaty rights and sovereignty of tribal nations, but we also need to be supporting each other as we all take on this very difficult time of fighting to ensure that our relatives are cared for.
I have prayed over a data set before. The last time I did that, it was a data set related to our babies who had died. I take my responsibility for that data very seriously. Those are my ancestors, and we need to fight for our ancestors. We need to fight for the upholding of our stories, and we need to fight to ensure that our relative stories are not hidden, are not made invisible, and are used in a way that builds forward the strength of our nations.
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